A four-year-old Gazan girl with an ultra-rare genetic disorder has finally been evacuated from Gaza – but has since suffered a huge seizure in hospital in the United Arab Emirates.

Sky News has been following the plight of Julia Abu Zeiter for two months. It has been a story of hope, heartbreak, kindness and cruelty.

Now, the little girl is out of a warzone but in intensive care and without her parents who were denied permission to leave Gaza.

In May, we revealed the intense efforts of a family in Washington whose own daughter has the same rare condition called alternating hemiplegia of childhood (AHC). We also reported how initially permission was denied for Julia to leave Gaza to access life-saving treatment.

Over the past eight weeks, Simon and Nina Frost have worked day and night to raise awareness of Julia’s case.

With remarkable determination, they brought together a network of people – from governments and charities.

Two weeks ago, after multiple failed efforts, permission was obtained from the Israeli and Egyptian authorities to grant her permission to leave Gaza along with a few other children in urgent need of medical care.

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The effort to evacuate Julia has been led by a US-based charity, the Palestine Children’s Relief Fund (PCRF).

Speaking to Sky News, the head of PCRF’s Treatment Abroad Programme, Tareq Hailat, said: “Julia’s evacuation was one of my toughest but most rewarding experiences.”

He continued: “It took the combined efforts of many, including PCRF, the AHC community, journalists, and members of the USA and UAE governments. PCRF had to achieve the nearly impossible.”

But for reasons that remain unclear to the PCRF and all those involved in her evacuation, the Israeli authorities denied permission for her parents, Amjad and Maha, to leave. They remain stuck in Gaza with Julia’s older sister.

At the eleventh hour, Julia’s teenage aunt was granted permission to travel with her to Egypt and then on a medical flight to Abu Dhabi.

Mr Hailat said: “Securing approval for her departure came at the very last minute, just 30 minutes before the convoy’s departure, after many sleepless nights. It was an exhilarating moment, but also bittersweet, knowing that thousands of other children deserve the same chance Julia received.”

In Abu Dhabi, Julia initially responded well to treatment and to her new surroundings.

But this week she suffered a massive seizure which is not uncommon. AHC is sometimes called the “human timebomb disease” given the tendency for it to trigger life-threatening seizures, often brought on by stress.

Julia’s father Amjad told Sky News that he and his wife are distraught.

In a desperate exchange with Sky News via WhatsApp, Amjad said: “Our heart is attached to Julia because she is far from us and we do not sleep well because of thinking about her so much.”

Amjad said: “Julia is crying from pain, and when we watch a video of her crying, my wife cries immediately. There are some videos that I delete because I do not want my wife to watch them because it is so painful for her.”

He added: “I can conceal my feelings internally and endure a little, but my wife cannot.”

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Amjad and Maha’s other daughter is six years old and remains with them in a tent in central Gaza.

“My daughter Sham asks me, ‘When will we see Julia? This is my beloved sister. I miss her’.”

“We all have a heavy heart and think about her a lot. Is she well today? Did she eat well? Did she take medication today?”

The challenges are compounded because the condition is so rare and many medical professionals do not have experience treating it. Amjad worries too that Julia’s aunt will not be able to cope.

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He said: “Regardless that her aunt is with her, she will not understand Julia’s condition like we do. Four days ago, she sent me a video of Julia, and she did not notice that Julia’s right half was not moving. Even the doctors did not notice.”

Julia remains in the intensive care unit at hospital in Abu Dhabi but is showing signs of improvement.

“Today, we spoke with Julia via video. She was waving her hands at us, she cried when she saw us. She misses us and so do we,” Amjad said.

Amjad, Maha and Sham hope to leave Gaza soon to be reunited with Julia. But the borders to Egypt remain closed and the war continues.

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Speaking to Sky News, Mr Hailat said: “I want to emphasise that this medical evacuation is a drop in the ocean. Thousands of other kids are still in Gaza awaiting medical evacuation.

“The Rafah border crossing must be immediately reopened to allow for the safe flow of humanitarian aid and medical transfers.”

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